Tuesday, September 23, 2008

You'd think I'd have learned my lesson by now. There is a very simple rule to follow to help ensure a decent night's sleep: At 3 AM, whatever you think you should do is completely wrong and you must immediately do the exact opposite.

A few years ago, I'd just returned from a leafleting trip to Southern California, and I'd crashed a some pretty sketchy motels. Because I am cheap. Anyway, the night after returning, my arms started to itch. I went to bed, and at around 3 AM the itch became unbearable. I got out of bed and found raised, red bumps all over my arms and chest. I tried anti-itch cream, but it didn't help. So what did I do? Did I go back to bed? No. I went on to Google. Within 15 minutes, I was convinced--convinced, I tell you--that I had been attacked by bed bugs in one of the motels. And that they'd hitched a ride back home with me in my suitcase. One click leads to another, and I'm drowning in horror stories about how impossible it is to get rid of bed bugs because they are apparently the immortal spawn of Satan himself and no mere man can defeat them alone. So now it's 5 AM and I'm nearing a panic. I decide to check out our bed to see if there are any bed bugs. So I get my flashlight and sneak up on Nick, hoping to catch one of the little devils in the act.

"What are you doing?" a sleepy voice asks. "Are you pretending to be Gil Grissom or something?"

Busted. Nick props himself up and stares at me. My flashlight droops. "I'm itching," I said. "And I went on the internet."

Of course the hives turned out to be just that--hives. Contact dermatitis, probably from some laundry detergent or fabric softener used by one of the motels. Take lots of antihistamines and wait it out. No bed bugs. No Satan lurking in my closet.

This is all to say: Whatever you think you should do at 3 AM is WRONG.

So last night at 3 AM (and then 3:30 AM, and then 3:45 AM, and then 4:05 AM and so forth), I'm freezing, then roasting, then freezing, then roasting. My jammies are damp with sweat. Every muscle in my body hurts. I'm tossing and turning. I can't get comfortable. I'm having horrible dreams. I'm freezing again.

Logic--real logic, not 3 AM logic--would dictate to 1) get out of bed, 2) put on dry jammies, 3) take some pain medication, and 4) walk around the house for a few minutes to shake the bad dreams.

But 3 AM logic says to stay in bed, huddling under the covers, soaking the sheets in sweat so that they can't keep you warm either. Then fling off the covers and flop around. Then pull the covers back on. And whatever you do, don't get out of bed. Staying in bed and suffering is the only correct thing at this point.

I finally got up and changed clothes, but I was too foggy and/or stupid to take some pain medication.

I think I need a glowing neon sign in my bedroom. YOU ARE WRONG, it will tell me. I'll squint at it--it'll need to be really big so I can read it without glasses--and think, huh? YOU ARE WRONG. But I should stay here and ache and sweat through my tank top and be miserable. YOU ARE WRONG, the sign will blink. WRONG. WRONG. WRONG.

But by 3 AM logic, would I listen? Would anyone? Or would we unplug the sign and, minutes later, find ourselves Googling bed bugs or leukemia or whatever other horror will lead us, flashlight in hand, back into the now-dark bedroom?

Sunday, September 21, 2008

The Spoon Theory is a great way for "normal" people to understand the day-to-day challenges for people with illnesses and other disabling conditions. Totally required reading. There will be a quiz.

It's nice to be able to use the shorthand the essay provides. Instead of saying, "I'm tired, but, like, really really really tired, as opposed to the tired I am all the time," I can say, "I've got one spoon left." (You can replace "tired" with "nauseated", "in pain," "dizzy," "generally sick feeling," and so on.)

Thursday, September 18, 2008

I've been avoiding my happy fun drink. I know I should drink it every day, but it's gross and I hate it and I put it off and then it's bedtime and I've already brushed my teeth, so can't I just skip it for today?

I've been using (and avoiding) the "orange" flavor. Today I picked up a bottle of the "berry." Not strawberry. Not blueberry. Not cranberry. Not huckleberry. Just "berry."

Perhaps in honor of the light purple/pink berry drink, my camera decided to put a purple band at the top of my video. Please ignore it.

I'm not sure if the berry is better than the orange, or if it just seems that way because it's different. And I'll come to hate it the way I hate the orange stuff.

My willingness to drink the Happy Fun Drink is not exactly boosted by the constant nausea that's plaguing me. I don't know if it's a side effect of the meds or a sign of a die-off reaction. But I've been nauseated for three weeks. Eating tends to make it worse, but not eating results in hypoglycemia. As I've said before: I am SO MUCH FUN at parties.

So today I went in for lab work, in the hope that we will refine the diagnosis of Lyme disease (or lack thereof). As I've mentioned before, the IGeneX test last month was "indeterminate." The IgG was positive; the IgM was indeterminate. So I've been on antibiotics for three weeks, hoping that when/if the antibiotics kill do their thing, the dead Lymies will show up in my blood stream, causing my immune system to say, "Holy crap! There's something new here!" and then make more antibiodies, which we will then measure.

So we sent off the IgM IGeneX test. In addition, Dr. R ordered a CD57 test, which is also helpful in tracking down the presence (or lack thereof) of Lyme. More info about this test is here.

I'll discover the results in early October. Can I handle the suspense? Tune in next week!

In other news, Nick might have a cold. Which means that I will probably get a cold. Because my immune system is about as functional as one-legged puppy at a football game. (Points to those of you who get the Homestar Runner reference.)

Tuesday, September 16, 2008

I've been having a rough time on the current round of meds. The die-off reactions have been rather brutal. And while this means that something is dying off and I might get better somewhere down the road, it sucks right now.

Tomorrow, 9/17, was supposed to be my last day on the azithromycin. Then on Thursday, 9/18, I was supposed to get my Lyme IgM antibodies rechecked so we could figure out if some of this is Lyme disease. (My previous IgG was positive; the IgM was indeterminate.) That same day, I start taking the diflucan in addition to the nystatin for intestinal yeast overgrowth. Which will, no doubt, produce even more exciting reactions.

But no. Now I'm supposed to keep taking the azithromycin until the Lyme IgM results come back. Logically I know this is a Good Thing, because I don't want to kill off some of the bacteria and then let the rest grow and multiply and become resistant to antibiotics. But I was kind of looking forward to a teensy-weensy break in the night sweats, nausea, increased cognitive difficulties, blah blah blah. No rest for the wicked. I've got so many pill bottles I can't keep them all straight.

Which is why I have my Super Duper Pill-Minder:

Here's the pills:

After I took the picture, I realized I'd forgotten to include three of the pills because I've just run out and will be getting more tomorrow.

Yesterday I saw someone whom I had not seen for about three weeks (before I started the latest regime of meds). She was shocked at how I looked. "You don't look well!" She went on to say that I looked thin, pale, and very tired.

Sadly, she's right.

I look like crap. More to the point, I look like I'm sick.

Prior to my illness, I was very active, and yoga was really doing wonders for my body shape. I mean, I lifted weights before, but yoga made the muscles smoother...more like a dancer body, except I remained bootylicious (which was a great asset--get it?--in my burlesque dance class).

I'm not able to be active any longer, and I've lost nearly all my muscle tone. (But much of my yoga flexibility remains, which makes me happy.) My weight has gone all over the place. First I lost about 10 pounds, now it's coming back--and in all the wrong places.

My face is puffy and drawn. I've got "sick eyes," which I can't describe but you can recognize when you see them. Ugh.

However, despite the things I cannot control, I try to keep myself looking as best I can. I learned a few years ago, during an unrelated rough patch in life, that keeping up outward appearances can actually boost inward attitudes. So I'm keeping my Derby Salon appointments. I've got a cute new hair cut, and I get my brows and lashes dyed every five weeks or so. (Otherwise, they're so blond as to be invisible.) Manicures/pedicures have been cut from our stretched budget (insurance won't cover things like supplements, shamanic healing, or massage), but I've got a collection of home-brewed beauty concoctions. Sometimes I even break out the lipstick.

So while I look like I've aged ten years in the last ten months, I'm doing my best given the circumstances. And that is good enough.

Monday, September 15, 2008

A year ago I would have laughed at the idea of visiting a shaman. Way too far out there, too "woo-woo." However, one positive outcome of CFS is that I've had to open my mind to a variety of healing modalities.

A few months ago I started seeing Rose De Dan at Wild Reiki and Shamanic Healing. All the Western doctors I'd seen had basically told me that there was nothing they could do. (Luckily I'm now seeing one who is willing to help.) I'd been to two acupuncturists. One wasn't helpful and I actually felt worse after seeing her. The other wasn't helpful, and I was told that I simply didn't have enough qi to move around and that I should probably try something else.

Enter the shaman.

She's fantastic. She does stuff that I would never have believed possible. It's very hard to describe...every session is different. But I almost always leave feeling wonderful, at least for a day or so. During one session, I went on what Rose called a "journey," in which I "became" a crow, swooping and diving and flying around, seeing the world through bird eyes. Another time I felt as if freezing cold lightning was coursing through my body. It wasn't exactly pleasant, but it wasn't something I felt I should stop. Anyway, descriptions kind of fail to convey exactly what happens, and sometimes I can't even describe it to myself.

Rose combines shamanic healing with Reiki, a form of energy healing. Nick and I have taken classes from her, and we are now both Reiki Level I practitioners. I'm taking a Level II class in October. Reiki is a way to direct universal life energy (qi, ki, prana, whatever you want to call it) to one's highest healing good, be that physical, mental, emotional, or spiritual. (I still have trouble believing that I can say that with a completely straight face.)

It's been wonderful to be able to practice Reiki on myself, as well as on Nick and the cats. Nick was just trained this last weekend, and he's got a crazy powerful energy flow, despite his protestations that he might not be able to do it "right."

I should note that all of our cats are also Reiki attuned, so we've got a complete Reiki household! Juno is like a Reiki sponge--she just sucks it in. Percy, however, is happy to receive Reiki, but he also is very good at giving as well. Bean remains a strange little wild thing, and I never know what's going on with her.

The great thing about working with non-human animals is that they don't know about the placebo effect. So when I "turn on" the Reiki and Juno comes running, shoving her head into my hands (even if I'm working on myself or Nick at the moment), it's much more obvious that something is happening than if I get feedback from a human subject, who can be swayed by personal beliefs, desires, etc.

Sunday, September 14, 2008

See, I knew when I got all existential-angsty last night that I'd feel better today.

It was pretty hard to get up this morning. My body just would not cooperate. Finally I rolled out of bed, crawled into the hallway, and had Nick pick me up to standing. That major feat accomplished, I spent some time on the window seat with Juno, basking in the beautiful September weather. The sun was out and the breeze coming through the window had that hint of possibility that only seems to be present in spring and fall. It was such gorgeous day that, damn it, I was going to take advantage of it.

I informed Nick that he was going to take me out to breakfast at Cafe Flora and off we went. I think I was feeling pretty good because I'd forgotten to take my nystatin last night, and I refused to take my morning medications (including more nystatin and azithromycin) until after we got home, so if I ended up feeling sick I would have at least had a nice breakfast.

On a side note, I am looking forward to later this week when I stop taking the azithromycin. I don't know if it is contributing more to the die-off/side effect nastiness, or if it's the nystatin, but I'll be happy to have it over. Of course, then I start the diflucan the next day, and that will probably have its own set of problems.

Anyway, I managed to get a little gardening in this afternoon. I have to move pretty slowly, and at least half of the time was spent sitting in my lawn chair, but that's OK. I moved around a few plants that were looking unhappy and got my little back garden ready for some fall planting.

Unfortunately, I fear I hit my stopping point about 15 minutes before I actually stopped, and I hope I don't pay for this indulgence tomorrow. Still, tonight we eat tomatoes from my garden.

And since I'm writing about gardening and sometimes put myself out there as someone who might know something about it, occasionally I get basic questions like, "What's the difference between an annual and a perennial?"

And my ever-so-reassuring and knowledgeable answer will be: "In what respect, Charlie?"

Saturday, September 13, 2008

in 17 days i will turn 30. and i'll still be sick. there's little doubt about that.

in a little over two months, it will be the one year anniversary of the day i started to get a sore throat and feel tired. we had already rsvp'd to the potluck thanksgiving dinner, so i baked my apple crumble anyway, and we drove out to the party. we left a little early because i wasn't feeling well. i was annoyed that i was catching a cold.

i don't know what i'm doing with my life anymore. i don't feel like myself, at least the self i could be proud of. i used to tell people that i was an activist. i don't know what i am anymore.

(disclaimer: i know this sounds horribly whiney and self-pitying. tomorrow i'll probably read it and be embarassed about how self-involved i am. and i'll probably be in a better mood. and if you get the reference in the title of my post, you can see that i've not totally lost my sense of humor, as elite-uppity-English-major as it may be.)

Thursday, September 11, 2008

Every day I'm supposed to drink this "Energy Revitalization" stuff. It's a powder, flavored either orange or berry, and you mix it into about eight ounces of liquid. At first I tried various juices, but I've discovered that water is the best mixer because it's going to be disgusting no matter what.

I was asked by a friend to explain the nutritional changes/challenges of CFS. She acknowledged when asking that my being vegan is not in question. However, for anyone else wondering: Being vegan does not cause CFS.

OK, now on to the real topic. The basic advice from Dr. Teitelbaum (and my personal doctor, Dr. R) is pretty standard. Don't eat crap. Eat real food. This is, I think, more important to emphasize with CFS because when you're exhausted, nauseated, and can't think straight, it's much easier to either skip meals or fall back on whatever is easiest. In my case, PB&J sandwiches. Luckily, Nick has taken over cooking in the evening, and he's very good at making sure I eat my veggies. Or, as he puts it, "food that isn't beige."

So once you've gotten sick, it's very easy to develop nutritional deficencies. Also, once you're sick and problems compound, your body may have difficulty processing or creating various important nutrients/chemicals/whatever. That's why it's important to repair any problem areas (I had very low vitamin D, for example), and then to keep your nutrient levels "fully stocked."

Also, if it's suspected that you have yeast overgrowth, you should cut back on sugar intake, because sugar makes the little yeasties happy. You should also take probiotics to make it harder for the yeast to compete in your gut.

Acetyl-L-Carnitine and N-acetyl-L-Cysteine tend to be lower in people with CFS, so supplementing those can be helpful. Coenzyme Q10 may also assist with energy recovery.

Finally, there are nutritional and herbal remedies for many of the bothersome symptoms of CFS. Taking calcium before bed can assist with sleep. Reducing caffeine can help with anxiety. Suntheanine can both relax you during the day and make it easier to sleep at night. Of course, now we're sliding away from nutrients/diet and into supplements. It's a blurry line, but I think I've mostly covered the nutritional stuff.

Wednesday, September 10, 2008

Chronic Fatigue Syndrome (CFS) goes by many names--chronic fatigue and immune dysfunction syndrome (CFIDS), post-viral fatigue, myalgic encephalomyelitis (ME), and so on. Fibromyalgia (FM) is often associated with CFS. But what's in a name?

I'll be using "CFS" to describe what's ailing me. I dislike the name "chronic fatigue syndrome" because it makes it sound like I'm just tired all the time. And I am, but there's much more to it than that.

Basically, I went from a go-go-go, always on the move, can't sit still girl to near-disability. I used to do yoga five or six times a week. I loved hiking, biking, weight lifting, and so on. I volunteered for Vegan Outreach's Adopt-A-College program. I read, I cooked, I had a life. Now I'm running at about 20% capacity. I used to take 15-mile hikes; now a walk around the neighborhood is about all I can handle. Normally, I'd take this time to sit back and read, study, do something productive at the computer. But my concentration is just gone. Reading itself has become difficult. Yeah, it sucks.

Anyway, the Big Question is what causes CFS. Theories abound. Some morons, er, I mean, doctors claim that it's totally psychosomatic and that we're not really sick. They can go jump off a cliff.

Other docs speculate about the role of viruses, particularly Epstein-Barr (mono), or EBV, and Human Herpes Virus 6 (not genital herpes, btw), or HHV6. There are questions about the role of bacterial infections. Hormones, vitamins, blah blah blah.

My personal theory is that something in your body goes wrong. Let's call that Event A. Event A might normally resolve itself and everything is fine. But in this case, Event A causes Event B. Which combines with Factor C and spawns Factor D and Event E. This goes on to depress immune function which leads to infection with Bacteria F. Then your hormones go nuts and it results in Condition G. In order to fix what's wrong, i.e., get better, you'll need to look at A - G, not just at A.

Jacob Teitelbaum theorizes that something (maybe Event A) can lead to hypothalamic dysfunction, which causes problems to mount up. I think that this page does a very good job of summing up his basic theory. I know that his website is kind of flashy and it turned me off at first; he kind of looks like a snake oil salesman. However, having looked into his theories and research, I think his treatment protocol makes sense. Get good sleep. Get your hormones to the appropriate levels. Treat any infections (bacterial or viral). Make sure you're getting proper nutritional support. Increase activity, as tolerated. (Jumping the gun and getting too much exercise can and will cause a severe "crash," leaving you much worse off than you were originally.)

This protocol might not work for everyone, especially because so many problems are tossed into the CFS trash can when doctors don't know what else to call it. Just as so many CFS patients are told repeatedly that they are just depressed. Because "depression" is an easy trash can to stick patients in when you don't know what else to do.

I realize I sound cynical, and that's because I am. After getting bounced from doctor to doctor, I'm so happy to have finally found someone who thinks of CFS as a serious illness that deserves treatment. And that "treatment" can come in many forms (sleep, hormones, nutrition, medication, etc.); it doesn't have to come in one magic pill that's advertised on TV.

I wrote a note to someone regarding my latest meeting with Dr. R on Aug. 27. Rather than re-write it, I've posted the note. Some of it might sound strange because I'm writing to a particular person and not to a general audience, but hey, I've got CFS and can be lazy like that.

August 27:

I tested positive for Chlamydia pneumoniae (this is not the STI chlamydia), which can be a problem for CFS patients. I was also tested for Lyme disease. The Western blot Lyme test was “indeterminate.” The IgG results were positive, and the IgM results were indeterminate, according to the interpretation of the IGeneX lab (which uses different criteria than the CDC).

In response to these tests, Dr. R has prescribed azithromycin, to be taken for three weeks, beginning 8/28. It should clear up the Chlamydia pneumoniae. Also, he thinks that if I do indeed have Lyme, it could cause enough of a die-off that the dead bacteria will be released into my bloodstream, thereby causing my immune system to mount an antibody response, which will then show up on a repeated IgM test. (Lab work to be done on 9/18.)

Dr. R also has prescribed nystatin and diflucan to combat a probable overgrowth of yeast in my intestinal tract. He suspects yeast overgrowth based on symptoms. I began the nystatin on 9/4, and will begin the diflucan on 9/18.

Dr. R warned that both the azithromycin and anti-fungal medications could cause a die-off reaction, which can amplify my current symptoms. This is either happening or I’m simply experiencing nasty side effects. In either case, I definitely feel worse on the medication, but I’m hopeful that it’s an indication that bacteria and yeast are dying off.

Dr. R also prescribed tramadol as needed for pain. I am to continue taking my previously recommended supplements, and add a probiotic, quercetin, and D-ribose. The probiotic is to maintain healthy bacteria during the antibiotic treatment, as well as to help fight off the yeast overgrowth. The quercetin is supposed to help ease die-off reaction symptoms. The D-ribose helps with energy/fatigue.

This means that my meds/supplements currently include: Azithromycin, nystatin, levothyroxine, Yasmin, sertraline, clonazapam, tramadol, B vitamins, a nasty-tasting vitamin drink mix, B12, calcium, vegetarian DHA, iron, vitamin C, vitamin D, N-acetyl-L-cysteine, ashwagandha, probiotics, quercetin, and D-ribose. I have chart posted to the fridge so I remember to take them all, and at the right times of day.

I've seen so many doctors that I started keeping a written record of who said what when. I'll post it here because I'm too lazy to re-write it in a more interesting tone:

The week of Thanksgiving 2007, I came down with what I thought was a cold. Symptoms include extreme fatigue, headache, dizziness, ear pain, and sore throat. In December I was given three rounds of antibiotics (azithromycin, then levaquin, then azithromycin again). I also had a sinus CT and saw an ENT. No sinus involvement was detected. By January 8, my ear pain was gone, but other symptoms remained. I saw Dr. Cairns in Infectious Disease. Lab tests showed “no sign of infectious disease.” My former primary care physician, Dr. Cynthia Smyth, seemed at a loss and vaguely annoyed by or uninterested in my case.

On January 22, I saw a new primary care physician, Dr. Pamela McDonald at the Polyclinic. Lab tests showed a low ferritin level (12), low vitamin D levels, and B12 levels on the lower side of normal. I started taking an iron supplement, increased my B12 supplement frequency, and began taking a 50,000 IU once-a-week vitamin D supplement. I also began acupuncture treatments on the recommendation of a naturopath.

Symptoms continued without relief. I always felt much worse after any kind of physical or mental exertion. On March 6, I saw Dr. McDonald, who said she wasn’t sure what was wrong and referred me to Dr. Hammond. On March 10, I discontinued acupuncture treatments, as I did not notice any results.

On March 11, I visited Dr. Paramita Mukherjee at UW Internal Medicine for a second opinion. She ordered new ferritin and vitamin D tests and was unwilling to consider other possibilities until the results came back. Ferritin was now up at 48, and vitamin D was “a tad high.” Still, even with improved lab results, my symptoms are no better. Dr. Mukherjee said I should just wait a few more weeks to see if I eventually feel better. This seems unlikely at this point.

On March 19, I saw Dr. Arvin Mokha, an allergist at the Polyclinic, to determine if my symptoms could be the result of an allergy. While I do have non-allergic rhinitis, all standard allergy tests came back negative.

On March 20, I saw Dr. William Hammond, a hematologist at Minor and James. He ran several tests. On April 11, I returned to go over the test results. All results were normal. He suggested that I might be convelesing from a bout of acute mono from November. He sent me back to Dr. McDonald.

On April 21, I saw Dr. McDonald, who believes at this point that I have chronic EBV infection or chronic fatigue syndrome, which she asserts are one and the same. She says that most patients with chronic EBV get well within 2 - 3 years at the maximum. I am confused because some of the literature I've read online suggests that chronic EBV and CFS are not identical. Dr. McDonald suggested that Wellbutrin or Provigil might help improve the fatigue (they didn't)....

At this point, my pre-written history ends. So here's the quick summary of what's happened since:

In May I saw yet another doctor (Dr. Samson) at the UW. She confirmed the diagnosis of CFS, because everything else she could think of had been ruled out. She was certainly nicer than the other internists I'd seen, but was unable to offer much more than sympathy and a referral to the Chronic Fatigue Clinic at the UW, which has a waiting list of more than six months.

I kind of drifted along for a while, hoping to find someone who would offer a possible solution. In August, I saw Dr. R at the Healing Arts Partnership. He's an MD who works in conjunction with an ND, and he specializes in CFS, fibromyalgia, chronic Lyme, and other complex/chronic conditions.

He follows the general protocol of Dr. Jacob Teitelbaum, who wroteFrom Fatigued to Fantastic, a well-known book in CFS circles. Dr. R immediately started looking at things that my other doctors hadn't considered, and I'm cautiously optimistic about my chances for improvement.

About Me

In November 2007, I got sick and didn't get better. Many doctors later, I was finally diagnosed with chronic fatigue syndrome and, later, Lyme disease. This blog is my way of keeping family and friends updated on my journey towards wellness.